dsdmom

Since I have developed dysautonomia, I have been unable to tolerate SSRIS and SNRI's. I take Wellbutrin now but can only take 200mg - any more and I start developing serious side effects. A new psychopharmocologist has suggested I try Lamictal - she said it is not usually known to cause hypotension and can be helpful in PTSD patients. Does anybody have any experience with Lamictal and dysautonomia? Doctorguest, do you have anything to add?

Flop, I am curious about what your doctor said about us being more aware of our bodies. I've wondered about that - but the question is - WHY? Did you doctor have any reasoning behind it?

NDRF does have live chat (ndrf.org). Members usually organize one a couple evenings a week - you can go there and post about it. I am sure others will join you!

Tammy, Any chance you have TMJ? I was recently diagnosed and have facial pressure as well that is not related to sinuses.

I take licorice because I could not handle the Florinef. One thing I learned is that there are 2 forms of licorice supplements - glycyrrhizinated and deglycyrrhizinated. The deglycyrrhizinated is not as potent. I started on the deglycyrrhizinated form (Nature's Way I think was the brand) and went very slowly since I am very sensitive to things. Once I was taking several a day my pharmacist moved me up to the glycyrrhizinated form. I use Douglas Laboratories' version - started with once a day and now am at 2x a day. The pharmacist originally told me that it takes a couple of weeks to build up. I would say just go slowly and hopefully you will find a difference!

I read somewhere (too tired to look it up now!) that fatigue is particularly bad after/during a flare up of symptoms. I don't know the mechanism behind it, but I guess it's common.

Ugh...I am worked up just from reading about your experience. It's all too familiar - doctors who don't know/don't care! I am so sorry that you had this experience and hope you can find a new specialist who will be able to help!

I have developed an extreme sensitivity to SSRI's and can no longer take them. I did not do well with Effexor (SNRI - same process really) as I had bad chest pain and headaches. I'm wondering if anybody else who had a bad experience with Effexor did ok with Cymbalta.....

Becca, I have to ask - who is the "they" you are referring to? Why do "they" have all of this power?0

Lina, I just started seeing Dr. Novak - saw him yesterday for the 2nd time at UMASS Worcester (not too far from you, right?). Anyway, I really like him and he seems very knowledgeable. He worked with Philip Low at Mayo for 2 years at some point in his career so he's got that going for him too... Anyway, just wanted to say that I would definitely recommend seeing him if you want another opinion!

Morgan, I'm sorry your son is going through this. I just wanted to let you know that I have come off Effexor - I actually wasn't on it all that long but had awful side effects so had to come off. I just wanted to let you know it's possible! I was not on a high dose so did not have to wean...but someone else made the suggestion of talking to a pharmacist and that might be the way to go. Although quite frankly, his primary should buck up and act like a doctor, not a child, and start caring for his patient. Just my 2 cents.

Melissa/Sunfish I would love to see what else you have written on this in the past - let me know if you find some of your posts. I guess I'm confused as to whether or not my fatigue could be from CFS or not. No sore throat but COMPLETE exhaustion for days after having a party for my daughter this weekend. Thanks!

Just a note about Dr. Novak - He is now at UMASS Worcester and is seeing patients there.

Doctorguest, I may not understand your reply correctly, but if this is a genotype issue, why would this type of problem only develop when one develops ANS issues? I used to have no problems with drugs - it's only since I've had dysautonomia that that has changed.

Anyone taking a new supplement needs to consult a doctor but Butcher's Broom is a mild diuretic. http://www.drugdigest.org/DD/PrintablePage...75,4087,00.html Just wondering if anyone had heard for Diosmin. Thanks!

I haven't received any responses on this so am bumping it to try again to see if ANYONE has insight into this....

I take Wellbutrin - could not handle the ssri's. I am on 200mg (100mg 2/day) but started at 100 for about a week before I stepped up. I, like you, am very sensitive to drugs now. Just take it as slow as possible. If 150 is too much, ask your dr. if you can start at 100 for a while.

I can't say why it happened to me, but ever since I have gotten this dysautonomia I can't handle any ssri. I used to take Zoloft no problem - not it makes my breathing worse. Lexapro, Celexa and Effexor (snri) had weird effects too. I'm glad that you can handle Lexapro and hope you can start getting it. Have you stopped the celexa?

Yesterday I met with a European pharmacist who went over lots of natural supplements with me. When I suggested Butcher's Broom she said that Diosmin was better. Has anybody else tried Diosmin? Any adverse reactions or did it help? Thanks!

I had a terrible time with Celexa. It actually brought on my latest relapse of symptoms. I only took it once too!

I suppose I'm a bit confused what you mean by "just Pots." Do you mean that you have no symptoms other than tachycardia upon standing? Or do you have other issues, like GI problems, fatigue, etc... but do not have something else like EDS or CFS or Fibromyalgia? I don't have any other diagnosis, but I have a lot of issues with the POTS.

Thanks for the update! Keep us posted... Where did you get your cream?

Angela, Do you have any pain in your neck? Is it super stiff or can you move it? When I had my LP I got a low grade fever as well and felt terrible - the docs kept asking if I was in pain and although I felt crappy all over, I did not have a stiff neck. I was scared I had an infection but they kept insisting I didn't. Apparently they were right, but if you DO have neck stiffness and pain, DEFINITELY call your doctor. That is a sign of an infection. Hope you improve.

Lina, I've got a cough/laryngitis too! Must be something going around the Boston area.... How long have you been without a voice? And are you taking anything? I hate taking any drugs now....

Hi Jacquie, Have you tried Zofran? Insurance doesn't like paying for it, but it works wonders.... It causes constipation though.